Saturday, January 22, 2011

Thank you to all who voted in the shutterfly contest! We have not heard the results yet, but we will let you know as soon as we hear something. We appreciate all of your support - even something as small as a click to vote!

We survived the snow and never had to use the generator, although we were very prepared :) It was funny because most people were getting stir crazy after three days of the crazy ice that wouldn't go away, but nothing really changed for us. If anything, it was nice because we were staying warm had a beautiful snowy scenery to look at out the window.

So before I get to the fun news, I just want to share with you all that the 19th was Skylar's 14 month "birthday" and our 1 year anniversary of getting an official SMA diagnosis from our pediatrician at her 2 month check-up. That day, I was supposed to have lunch with Kyle's mom after our appointment. I remember leaving the pediatrician's office hysterical crying and people at the check out desk asking me if I needed a room to calm down. I remember thinking, "lady, this is as good as it's going to get for a while" but I think I said politely that I was okay to drive. I called Kyle's mom crying to tell her what had just happened. We still met for lunch and I remember being very encouraged by her words despite the diagnosis. I was also in shock. It felt so surreal. Sitting at Taqueria Del Sol on the patio, looking at the ATL skyline with Skylar in her car seat next to me... Surely this is not happening. This can't be real. My daughter can't be dying.

Today, the 22nd is the one year anniversary of hearing the diagnosis from the neurologist. Even though I had heard it just two days before from the pediatrician, hearing it again for the second time cut just as deep and made it all the more real. I cried a little bit, but luckily Kyle was there to hug me and comfort me. We left from the neurologist's office to go to Florida for a cousin's wedding since Skylar was still "okay" and we could travel with her. Our doctor's motto was "the sooner, the better" for everything. We enjoyed a break from reality with extended family and didn't let them know about Skylar until after the trip.

As much as those are days I don't like to remember (reading back to "The Night Shift" post this past March), it is so nice to celebrate these "1 year" marks with Skylar still with us and doing well all things considered. It's also very funny to read my past posts knowing what I know now. I have learned so much in such a short period of time... I feel like I have gone through college all over again with a pre-med degree between the genetics, nursing, respiratory therapy, physical therapy, pulmonology, GI, medical equipment, etc. To think I started Clemson majoring in biochemistry... who knew!

Anyway, enough of the flashbacks - onto the fun stuff!!! We got a lot of fun packages this week!

First of all - a huge thanks to the Grindle family for sending us a switch-adapted toy for Skylar to play with. For those of you who don't know, Skylar can barely move her arms and even her hands are getting weaker so she can't hold stuff or pick something up to move it. Ben's grandpa has been making switch adapted toys for him since he is very similar to Skylar and has a lot of extra ones. They are typically really expensive, but Ben's grandpa figured out how to make them at a relatively low cost. This enables Skylar to actually close her hand around a "switch" to activate a toy instead of pushing a hard button or something more difficult. THANK YOU SO MUCH! What a fun package to get this week!

Speaking of fun packages, Blankets4SMA sent Skylar a wonderful spring fleece blanket that is very nice and bigger than our other blankets which is perfect for her to grow into a little bit. Thank you B4SMA!!!

Drum roll please... Skylar is getting a big girl bed!!! In fact, she is going to be using Kyle's twin bed from when he was little. Grandpa Jones brought it to our house for us and now Kyle just has to put it together. We'll get pictures posted soon. It's fun because now that I know my baby is a girl, I can pick out some girlie colors for the bedding if Kyle will let me :) I love what we have now, but it might be fun to change...

An even bigger drum roll please... We went to the GA Aquarium!!! That's right, we got out together as a family and went somewhere fun :) Not only did we go somewhere fun, but we got a special private tour after hours so we didn't have to come in contact with all the kiddos carrying germs during normal hours or deal with the stress of crowds and creating a scene if she needed to be suctioned or anything worse.

I mentioned doing this a while back to our hospice social worker and she put is in contact with Meg, a lovely woman from Children's Hospital in the PR dept., who worked with the aquarium to get it set up. A really sweet lady named Martha was our volunteer tour guide and was fabulous! She was patient with our taking care of Skylar and went at our pace. We were able to see everything close up and Skylar was totally captivated. She was a little cranky at first because we had to wake her up from her nap to get there on time, but I think she forgave us once we got there. It was amazing!!!

We first went into the Ocean's Ballroom where there is a big glass wall looking into the large tank with the whale sharks and Skylar loved watching the sharks swim by. Her eyes would follow them every time!

Our next stop was the window to the beluga whales. As soon as we got there, I had to suction Skylar so I had my back to the window and Skylar was facing the tank. As I was suctioning, I could tell something had her attention... I turned around and saw a huge beluga whale literally right over my shoulder head to head with us. It was nodding and turning and seemed to know what was going on and was communicating with us. It freaked me out at first, but I am so fascinated by animals it was really a very neat experience. The belugas were so full of personality and very friendly. I think we could have stayed there all night! I know I could have!

This was a fun picture to take because in January or 2006, Kyle and I went to a black tie event here with my dad and step-mom and had our picture taken in front of the very same window when we were dating. It's one of my favorites pictures although I can't find it on my computer to post right now...

We walked through the huge tunnel and it was fun to have all the fish swim over and around us. Skylar seemed to enjoy it! The huge rays and different varieties of sharks were incredible! We had watched Finding Nemo (still her favorite) before Skylar's nap to get pumped up for the aquarium visit :)

This was Skylar's face most of the time... no smiles, but she typically doesn't smile for things like this. We could tell she was really enjoying it because she was completely relaxed and entertained and didn't need suctioning all that much. Her eyes were locked on whatever we were in front of throughout the whole tour. You could tell Skylar was just taking it all in. She was such a good girl. I hope we can do this again for her in the near future.

She tuckered out at the end because she was off bi-pap for a really long time and only had an hour nap for the whole day. It was so great to finally get out somewhere fun with her to a place I know she would enjoy. She always liked sitting in front of the tall aquarium in the Children's Scottish Rite Hospital lobby so I knew this would be a hit! It was a truly special night that I will always remember. I am very thankful that we had the opportunity to do this. In the spring, we might try to get to the zoo :) It still takes us a while to pack everything up and get out the door, but watch out world - we're learning how to become more mobile!

Tuesday, January 11, 2011

If you have a shutterfly account (or want to make one), we've entered into a contest to win $1,000 and some shutterfly credit towards books and prints. I thought it was a one-time deal, but you can actually vote daily... So if you have a minute, please consider voting for us!

We created photo books for our parents for their Christmas gifts full of pics of Skylar and our family. With our submission, we hope to raise some awareness about SMA and maybe even win! The link to vote is below - thank you in advance!

PS - We're staying warm and enjoying the snow-covered (well really ice-covered) surroundings as we look out the windows. So far, no loss of power or any other crazy things. Our nurse actually braved the weather to come be with us - she's a New Yorker :) and Skylar got a bath today.

Funny story I'll leave you with.... Skylar was in her bath and I turned away to dry my hands and I heard a very large bubble sound (like the bubbles made from one of those water dispensers with the blue jug on top). I looked at Natalie with a "what was that?" look on my face and she started laughing and said Skylar tooted in the tub. She wasn't sure until she smelled it and we both cracked up laughing. It was such a loud noise that it startled me! That's my girl...

Hope you all are staying warm and enjoying the time off if you're able! Peace.

Thursday, January 6, 2011

I was hoping to post something two weeks after her birthday, but things got crazy... Then I thought, surely I will get something posted on her 13 month birthday, but that was not possible either because so much has been going on. The holidays came and went, family came and went, and here I am - left sitting at my computer finally with a little "spare" time. I should probably shower, but I really need to catch up on the blog :)

So starting back in November, we now have a generator that we bought off craigslist from a man who was unemployed and really needed the money to get through the end of the year. It was a great deal for both of us. I love win-win situations!!! We pulled it out once when some bad storms were coming through, but thankfully have not had to use it since. Our power outage was a nice reminder that we are not in control, yet we are being taken care of anyway.

Thanksgiving was really awesome. We fried our first turkey in our backyard with Kyle's parents and it was delicious! I promised a Thanksgiving picture of Skylar in her cute dress so here ya go!

In the beginning of December, Skylar got her second round of RSV vaccine but it was the first time we did it in the home. The nurse was very nice, but the timing was horrible because Skylar had just fallen asleep for her afternoon nap. Luckily, we stalled by filling out paperwork and talking about SMA, but I couldn't keep the nurse waiting for hours. We woke Skylar up and I felt awful because not only did she miss out on some sleep, but she had to wake up and get a shot right away. What a rough day for Skylar. This month, we got the timing better but shots are still never fun...

Kyle' been fighting some sort of cough/sinus bug recently; luckily I've managed not to get it. I am a germ freak so I make everyone wash their hands, cover coughs and wear masks when sick. Even though I get made fun of sometimes, I have to think keeping everything clean and sick people away is part of the reason why Skylar and I have not gotten sick. We feel very blessed that this is the first sickness we've had to deal with all year. Kyle's still fighting the cough three weeks later, but hopefully he'll be better soon.

The week before Christmas, Skylar started getting sick. She had a ton of huge boogers - really thick and goopy - and had no bowel movements. Her digestion slowed and her belly was getting bloated, which of course caused her to be in some pain and not a happy camper. When she doesn't digest well, we have to slow down the rate of her continuous feeding - which means we lose a lot of calories and volume. She lost some weight and it was not a great week for us. We didn't allow a lot of people to visit and the one friend we did allow (because he was going out of the country and wanted to visit before he left) probably wishes he wouldn't have come, lol. While our friend was here, Skylar's residual (the left-over undigested food in her belly) backed up to over 2 ounces and turned green, which caused me to freak out and almost have a breakdown. Usually Skylar has 1/2 ounce to one ounce in her belly, but two ounces was pushing her max. capacity. The fact that it was green was concerning because that meant bile had backed up into her belly. I dumped it out so her belly could start fresh, but that also meant that the pH was altered because I was dumping out a lot of the stomach juices/acids along with the bile. After consulting our pediatrician (the best doctor in the whole wide world to us), we ran her on pedialyte for 24 hours and checked her belly every 2-3 hours to see how she was tolerating it. Things were better the next day and I was completely relieved! I even felt good enough to leave for a few hours to take pictures of our neighbors who just adopted a little boy and our church's Kids Christmas Pageant.

Of course when she wasn't digesting and her residual turned green, my mind asked the question, "Is this it? Is her body shutting down? Isn't digestion one of the first functions to crap out on someone when they're dying?" I try not to allow myself to go there, but if I do visit that thought, I just make sure I don't dwell on it. It's hard sometimes to live completely in the present and ignore all the what-ifs. It's also hard because when I called the hospice nurse, she also brought up the fact that it could be the end since that is their job - to focus on the end and make the process as easy as possible. Our pediatrician also let me know he was not encouraged by the green coloring, but Skylar had proved him wrong before so he said he wasn't making any predictions :) and just gave us a to-do list to potentially make things better.

Since then, she's been much better. After a week, her boogers cleared up, she was so much happier - giggles and smiles - and regular dirty diapers. Lots of leaks, explosive gas and diarrhea, but I think things are starting to settle down and become "normal."

We switched her to a sensitive formula by Similac called Alimentum until we can get the Amino Acid formula covered. We're hoping insurance will pay for it but our hospice manager is working on it... The amino acid formula is like pre-digested food so that everything is in the simplest form which makes it really easy for the body to process, but of course it's more expensive. Right now, there are 11 states that require insurance to reimburse parents for this formula because of the medical need and the expense, but Georgia is not one of them... We'll see if medicaid or insurance will pick up the tab, but if not, we're not worried because God has taken care of us throughout our entire journey. Many people, a lot of people we haven't even met before, have donated money to help our family, and I wish there was a way that we could properly thank you.

Our Christmas was awesome. We decided to pack up and take all of our equipment and stuff to Kyle's parents' house for the weekend and it worked out really well. On Christmas day, my parents came over to join us for dinner. It was a lovely evening and the beautiful snow that fell and covered the ground was the icing on the cake. It was a prefect Christmas. With that said, my heart was breaking for those families who have lost loved ones and could not be together this year. I hope you were able to enjoy the holidays.

Since Skylar is over a year old, it's fun to think about what we were doing a year ago with her... New Year's Eve rolled around and I had to laugh because a year ago, I was standing over the changing table. Skylar was on her back with a bloated belly and I was massaging her gas out while Kyle brought his laptop into the room so we could watch the ball drop together. I remember thinking, "welcome to parenthood..." At that point, we knew something was up because of her "chicken wing" arm but had no clue that her bloating was because she couldn't swallow well and was taking in a ton of air with every attempt to eat.

It was on January 8 - a snow covered day - that we made it to see a specialist for her arm who told us we needed to see a neurologist asap. Our pediatrician called me within 30 minutes after leaving the office (while I was at home depot picking something up for Kyle) to tell me it was serious, but still would not tell me specifics. I just remember having Skylar bundled in her infant car seat next to a stack of wood on an orange flat bed home depot cart looking for shelving hooks when I got the call. I broke down as soon as I hung up with the pediatrician and called Kyle. I wanted to call him for comfort but didn't want to freak him out so through the tears, I asked him what kind of hooks he needed because I forgot... I was partly laughing because I was sobbing (knowing that something could seriously be wrong with our daughter) and people in the store didn't know what to do with me. Everyone in an orange apron looked like they wanted to ask me for help but were too afraid of what I might say or do, lol. I made it home and thus our journey with SMA began.

Anyway, Skylar seems to be stable now and we're continuing to enjoy the time we have with her. We've had family and friends in town after the holidays and have had a great time catching up with them. My dad's birthday was the 2nd of this month too so we've been REALLY busy! Not to mention I have been working on photo-editing, my own website, and other design projects like a logo for The Addy Grace Foundation (SMA family I know) and two other businesses. Not really sure where I get the time, but that's why the blog has been put on the back-burner.

Okay, I will do my best not to wait so long so you don't have to drink three cups of coffee to get through the next post :) Hope you all had a wonderful holiday season and a happy new year!!!

It's hard to know we are facing horrible odds this year, but we're trying to stay optimistic and continue to take each day at a time. Here's to 2011... Hoping to see some teeth poke through!

About Me

I love life. Even when it's not always great, it's better than not having it.

I started this blog as "expecting the unexpected" and didn't even know what was ahead! I was surprised with a pregnancy, delivered a beautiful little girl in Nov. 2009, and was later surprised with a diagnosis of SMA (spinal muscular atrophy) type 1. The Night Shift post in March 2010 is where the SMA journey begins... Our sweet girl went to Heaven on August 16, 2011 and is where Skylar's journey ends; however, ours carries on.